In April, Dr. Baldwin worked with our Scientific Director, Suzanne D. Vernon, PhD to provide comment on post-exertional debility to the Institute of Medicine Committee on Diagnostic Criteria for ME/CFS. The Association has been working with Dr. Larry Baldwin, tapping into his medical expertise and experience as a patient.

We are happy to provide his insights here as a guest blog post, as he talks about post-exertional malaise (PEM) as Post-Exertional Debility (PED).

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Post-Exertional Debility is an Important Symptom during Myalgic Encephalomyelitis
By Larry Baldwin, M.D.
I have pursued a variety of research interests such as: synthesis of an organic molecule designed to release nitrogen gas as a preservative, health care delivery issues at the Johns Hopkins Hospital Pediatrics ER and at the rural medical clinic in Onamia, MN, health care policy concerning the competitive environment for the teaching hospitals in the Twin Cities Metro area, and the early use of thrombolytics in acute lower limb venous occlusion to prevent chronic venous disease. So I was interested in using my research observation skills to study my own ME/CFS symptoms and have kept a record through the years.

From this record I see a pattern of symptoms, which I call post-exertional debility (PED), that occur following physical or cognitive exertion. This pattern is specific and vastly different from any post-exertional experience I had as an athlete, surgery resident or while practicing surgery. While training for marathons I was able to run through the “wall” that many runners experience. Now I experience a similar wall after minimal exertion and have not been able to train through or push through this wall.

This pattern of post-exertional symptoms has been very consistent while experiencing them almost daily during 20 years of disease. The onset and peak severity of symptoms is characteristically delayed following exertion. The symptom severity increases as the workload intensity and duration increases. Some symptoms appear only as the workload increases. This symptom pattern is different from that during an acute viral infection.

The following table shows how symptom severity increases and symptoms appear as workload increases. Workload may be physical or cognitive. The lowest level of workload will elicit migraine pain, fatigue sensation, cognate impairment and sleep onset prolongation. As the workload increases these symptoms increase in severity. At the next higher level of workload sleep abnormalities worsen with nocturnal myoclonus beginning and then worsening as workload increases. This has been severe enough, on occasion, to cause me to fall out of bed. Mild workload will not cause noticeable neutrally mediated hypotension, but at higher levels it occurs typically after a few hours of sleep at night. As the workload increases the hypotension is more severe, lasts longer and spreads into the daytime hours with greater interventions needed to treat it...

I do think that the term "post-exertional malaise" increases confusion in relation to ME/CFS.

When I first got ill I described myself as having a flu-like 'malaise', and exhaustion. 'Malaise' was the best description that I could think of to describe what I was experiencing. But I experienced it all the time, and not just after exertion. It was exacerbated with exertion.

So I think 'post-exertional malaise' adds to confusion for people who aren't familiar with the illness, because it may lead people to think that malaise is only experienced after exertion. (I'll spare you the story of my 'expert' NHS consultant in the south of England who thought that I should experience symptoms only after exertion!)

I think "post-exertional debility" is equally confusing.

I prefer the term: "post-exertional symptomatic exacerbation", but it's a bit of a mouthful so "post-exertional exacerbation" would be OK.

The second part of this article is mostly over my head but looks interesting. He has nocturnal myoclonus, gait problems and what I think is right foot drag. I didn't see him mention gluten ataxia but avoiding gluten eliminated my gait problems and right foot drag. I have no idea is this will work for him.

Even more workload is needed before gait impairment occurs but when it appears it is either a distinct limp with a positive right Trendelenburg sign due to muscle weakness (when standing on only the right foot, the pelvis tilts downward on the left side) or severe enough where I am unable to walk until I rest recumbent for about an hour after which gait is much improved.

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Well that's a relief - I thought I was just odd

Neuroimmune exhaustion is a very severe form of PED occurring only after prolonged physical exertion at high workload intensity, such as driving a machine 4 hours a day for three days consecutively. This can occur after prolonged cognitive exertion as well, typically 5 to 7 days of concentrated cognitive work for two to four hours a day

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Lucky man. A 20 minute personal phone call has the same effect for me.

If rest does not occur when exhausted, then viral infection certainly occurs and this can lead to bacterial infection such as pneumonia if I continue exertion.

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Whereas I either rarely catch any infections these days (well the last 29 years following 'onset') or I'm usually feeling so crappy that I don't notice.

My only comment is that for those of us doing viral testing, symptoms variability has a lot to do with the active virus also, and sometimes with no activity been increased, a new set of symptoms appear. Example: When I had Parvo, the hands hurt so bad but not anymore. HH6V my brain issues correlates to the viral load.....

@xchocoholic the Trendelenburg sign he's referring to is a weakness in the gluteus medius (butt muscle) so not related to foot drag.

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I'm trying to remember how my body used to react to walking.
It's been 7, almost 8, years since I stopped doing this so bear with me.

I didn't get out often and used a cart most of the time. I fell into anything near me if I wasn't holding onto something. If I went for a walk in the mall for instance, I walked next to the wall touching it often so I could balance myself on it. I still sway from time to time. I don't feel it happening but people around me dodge me. Lol.

I typically only walked if I had a shopping cart to hang onto. I know my first sign was leg fatigue in both legs but quickly turned into my legs not remembering how to walk. I had to think move right leg, move left leg while leaning on the shopping cart.

After a few minutes or 2-3 aisles, the right foot drag started with a numbing sensation at the exact same spot in the lower half my right shin that caused the top part of my right ankle and foot to feel numb. At that point I had to tell myself to raise my right foot high enough to walk.

I can't readily relate to butt numbing but by the time the foot drag started I was exhausted physically, mentally and emotionally.

@xchocoholic - not to be too finicky here but Trendelenburg isn't butt numbing either per se. It might have had something to do with your "sway" however.

When you want to move your left foot foward, your right gluteus medius (part of your butt muscles) needs to stabilize your pelvis at a level angle so that your pelvis doesn't drop down on the left and make moving your left leg forward more difficult. If the right GM is weak and/or has nerve damage and is unable to perform it's job appropriately it is called a positive Trendelburg sign on the right.

Foot drop is a whole 'nother subject. Also makes walking very difficult and can certainly be seen in the same patient who has a Trendelenburg sign if there is a general cause for the muscle weakness or nerve damage as opposed to a specific injury to one nerve.

Hang in there. Or should I say, hang onto something there? Especially if you're trying to walk?